PCS for 2.5 Years - Progress and Questions
 

Well, it's been 2.5 + years of major challenge since a motorcycle accident that left me with major long term PCS symptoms and nasty neck issues from whiplash. I have made significant progress, however still battle the daily struggle. I have tried just about everything you can think of for treatment (physio, neck injections, several neuros, specialists, CT, MRI, neck xrays, massage, etc). The only thing that helps moderately is massage, but is temporary. Taking over 1.5 years off of work didn't seem to be doing much for me, so I decided to go back around 7 months ago. Some days are OK, others horrendous. The constant fog, impatience, cognitive decline, lightheadedness and nausea are taking a toll. I try to stay positive, but sometimes very difficult.

I am client facing in my work, which involves visits to client offices, lunches, etc. I have had to pull back on booking too many appointments, as it sets off symptoms. I have found that my recovery after symptoms has gotten better. I am no longer ill for days following extreme onset of symptoms. More like hours and then I feel somewhat normal, but I also 2 years 7 months in.

Things that have helped me slightly over the years:

-I used to do hard weight training 3-4 days per week. Since the accident I have had to give it up completely. Upon trying to do 2-3 sets of light weight to test my endurance, I end up with 2-3 days of severe symptoms each time. I now refrain from all weight training and my workouts consist of brisk walks, etc. Nothing that will exceed my threshold. Listen to your body.

-Natural source Gravol (ginger root extract) for the daily nausea takes the edge off, without side effects. Highly recommend this for people who suffer from long term nausea. Completely safe and natural.

-Multi vitamin helps somewhat with long term recovery and lifting spirits through balanced vit intake, especially B's.

-Quality Omega-3 supplement reduces inflammation, overall good for the brain and provides a sense of better mental state.

I am hoping to get some feedback from some of you regarding my current most bothersome symptom. Each time I meet a client face to face, whether at their office, or lunch, etc I feel extremely lightheaded and disoriented for the first half hour or so. To the point where I have to excuse myself for fear of passing out in front of them. I'm sure a lot of you can relate, but it's the feeling of over stimulation from dim lighting, ambient noise, etc. Complete over sensitivity issues. It's still highly concerning and sometimes worry that maybe I am having a stroke or something. It really feels like not enough blood is being delivered to my brain. It has ruined my self confidence in front of clients and causes my to stumble through presentations (I try to now avoid) and even basic conversations. I have been bringing a co-worker along to meetings in order to take a break while they are talking, as it's still that bad.

Anyway, I am back in to a neuro chiro that my GP recommended, which will start next week. Hoping to make some progress there, but have tried so much now that I am doubtful. Any suggestions on people who have limited similar symptoms due to therapy/supplementation would be greatly appreciated. I really thought I would be further ahead at over 2.5 years. What a painstaking journey.

What is the actual B vitamin and D-3 content of your multi-vitamins?

You are not alone, we are all suffering from issues from concussion. We are all with you. :grouphug:

Well I experienced my worst bout of Vertigo in 2.5 years shortly after posting this. Got off of an elevator and the building fell like it was falling over. Caused major panic and didn't subside for hours. Slept all afternoon yesterday...Man oh man. Just when you think you have it sort of figured out...

Random,

Have you had your eyes checked yet?

When you say the building felt like it was falling all over it sounds very familiar. When I go grocery shopping the above my line of sight part of the tall shelves make me want to duck...they always feel like I am going to be hit by them and the colors of all the boxes and cans etc bounce around and overlap.

Crowded rooms leave me uncertain, the same room not crowded does not have that affect on me.

I went to a neuro optometrist this week and a bunch of those issues have been answered for me....my left eye is looking up and they do not track together now nor can they hold focus for long.

I did not know this but the eyes have a big input on balance, 20 % of the optic nerve system is linked to the ears and of course spatial orientation.

Just a thought.

Bud

I am reading this and feel a little embarrassed in a way to post since I am only 6 weeks out and fortunate from all I am reading. I am still not 100%; my husband says 75% but I feel fortunate. I am going to post anyway. Here is where I am.

Driving still a challenge. I tried last Sunday. Took my daughter on fairly straight roads to get coffee- not for me. I stopped where there wasn’t a stop sign; drove slow. Too much to think about. Had to rest for a few hours after. I had described all the things I was trying to pay attention to which I usually take for granted. My daughter said now you know how I feel trying to learn. :-).

At times it has felt very scary. I listen to my healing music and relax or if my husband around he holds my hand or holds me. I truly believe I will be back to 100% and of course when I have setbacks there is the fear of what if.

Its hard with extra stimulation. That pressure feeling comes and if I don’t go rest, I get cold. My body temp regulation is off at times. Sometimes I think I am like an old person. Feels like my house is my safe space. We have moved. My husband got us help our previous housekeeper and her husband. They were a G-d send. They were like my hands and sometimes mind and patient. Gave me something to do.

I ventured to the gym Thurs - my husband dropped me off and came back and got me. I was totally overwhelmed. I worked with my trainer on simple machines - didn’t do much. Sometimes I closed my eyes or just focused on one place. Came home & slept for an hour woke up completely dizzy went back to sleep for another two. Let much better. One of the trainers told my husband I looked really bad.

Other than that, I do not go out yet. Yesterday I didn't wear my ear plugs all day. I can watch tv and be on the computer within reason without headaches. I cannot watch if too much movement with light & sound etc. What I am realizing is I am not the best judge of me right now. When I thought I was at 85% -very astute Mark In Idaho- my husband told me I was more like maybe 50% functioning. I am taking all my vitamins by the way that you recommended and also another one a trainer who had a concussion recommended -German Creatin. Supposed to help the brain (not only muscles) during a concussion. It hasn't hurt me that I can tell
and I keep improving.

Thanks for listening. I am thankful for you all. So grateful for the support.

Your trainer is misunderstanding the value of Creatine. It reduces the injury if in the blood and tissues before the concussion. It's value when used after the concussion is not shown to make a difference in recovery. It does not appear to have a negative value during recovery. But, muscle building effort during recovery is not recommended as it requires the 'tear down and rebuild stronger' effort. This can flood the blood with the toxins from muscle breakdown. Not good during recovery. Just a note as it does not appear you are exercising to this point.

Glad to hear you have good objective support from your husband. His observations are valuable. You would do well to focus on small improvements. If you can maintain 75% for a couple weeks without causing a setback, chances are you will get to 80% for the next 2 weeks. 2 weeks is a common period of seeing improvements.

My best to you.

Louise,

I am off on temp regulation also.

Last summer I slept with sweats and socks...2 down comforters and 2 hot water bottles. This year isn't nearly as bad, down to 1 water bottle and 1 comforter for winter but I still get cold real easy and fast too.

Bud

Serious problems regulating body temp or sense of feeling warm can be tied to Thyroid malfunction. A full thyroid blood test is a simple process.

I would have temp swings due to reactive hypoglycemia.

This is actually something I haven't done in years and will talk to my GP about a referral the best she knows. Yes, the eyes do definitely play a large role in balance. What my vestibular system is lacking, my eyes are trying to pick up for. I close my eyes and feel quite off balance. I'm only 30 and docs are always reluctant to say that I may have vertigo as they say that I am "too young." I explain to them that my vertigo is related to head injury and not BPPV, which I have tested negative for twice now.

@Mark In Idaho - your comment about breaking down muscle and repairing/releasing toxins striked me and something I never though of seriously and a very good point, as I receive massage therapy for my very bad neck injury/upper back and trap issues. I have a vigourous massage the day before the bad vertigo bout as I was quite stiff. Although I have been getting massages 1-2 times per month for quite some time, I feel as though it was more vigorous than normal, which I feel was the contributing factor to setting off the attack the next day. I felt great after the massage, but likely endorphin release to thank for that. Has anyone else had massage set off symptoms? The toxin release would likely explain why each time I do any sort of light weight training I feel sick for days after. Man, I miss working out....But I miss my health more.

This injury is just such a mystery, even 2.5 years later and endless docs, specialists, etc. It's obvious that docs need to receive far greater training on PCS, as we can all agree upon. The last Nero visit I had resulted in the Neuro saying "You still have dizziness and nausea daily? That's not normal...." Thanks doc. I think that will be my last Neuro visit. Although they provide a lot of value to a lot of patients in some pretty bad shape, it was useless for my symptoms and could tell there was almost a lack of belief of the severity of what I was explaining. My GP has been the only one that has stood by me, believed in what I was explaining to her with genuine concern and helping me along. For that I am appreciative, but hoping more awareness and learning comes to the subject, as it can completely change people's lives, which has been my experience. Hoping as more mainstream content (Concussion movie for instance) brings more awareness and research. Until then, I will continue the fight.

Deep tissue massages are not recommended during psychotropic drug withdrawals due to increased symptology, I guess it could be the same for PCS.

Bud

Thank you Mark. I value your knowledge, support and feedback. I read in one of your comments if you have not healed within six weeks something additional (?) is going on. Could you elaborate please.

Also am I understanding I could be looking at two more months?? Not complaining, small price to pay for full recovery. Curious. I have told people perhaps two more weeks (work)

What are your thoughts re: continuing my simple workouts since just the experience of going was overwhelming. I guess I am not sure how to gauge. If I end up needing to sleep three hours but am ok after that for the most part is that ok. I took it easy today and yesterday.

Thank you again for your guidance and invaluable advice.

Blessings,

LouiseN

I am on thyroid meds. It's been about 5+ months since my last test. It was ok then. I notice when I am tired/overdid it my body gets really cold. Do you think worth mentioning?

Thanks for being here.

I have a mattress pad that heats on my side and my husband bought a small space heater and put it next to me in addition to extra blankets for when I get extra cold. As soon as I am well rested I regulate. If I get too active around the house (unpacking/putting things away with help-we just moved) and not resting enough it sets me off.

85% of concussions recover spontaneously within the first 6 weeks. The remaining 15% are all over the map time wise. There is speculation about many reasons for this other than injury severity. Genetics could play a part in how the brain regulates neuro fibrillary Tau Tangles.

There is no way to predict your recover time. Every concussion is different. Anybody who tells you different is ignorant about the realities of concussions.

The key is to lower stress and maximize your brain's ability to heal with good nutrition and avoidance of things like alcohol and caffeine. The Vitamins sticky has the list.

I think you should ask for a Thyroid retest. Thyroid problems can make PCS much worse. While you are at it, get your D-3, folate and B-12 checked. Maybe even DHEA and the other hormones and fasting glucose. They can all play a part in symptoms.

Thanks Mark In Idaho,

It is time for my blood recheck anyway. We have a Dr who is into preventative medicine and tries to check us every three months. We don't always do and he checks things no one has ever checked. So agree and good points.

I completely forgot I also get hot sometimes at night while sleeping it wakes me up when there is no heat on just my blankets. I'm on HRT so not hot flashes :-).
I just chalked it up to my temp reg off. I'm wondering if there is a correlation to eating a snack right before I go to sleep vs a couple hours before.

Anyway, what a journey. I admire you all and have a new found appreciation for patience and faith.

Curious about genetics. My Mom had an aneurysm in her brain; blood vessel broke at 39. Supposedly not hereditary. But like all things I guess one could have a propensity. My Dad had several TIAs when he got older. According to my last blood work this past summer I was in great health;exception, I did need more protein from meat and I started taking B12 that dissolves under the tongue. I have been following the vitamin regime you posted. Thanks!

LouiseN,

Are you using brand name HRT or targeted bio-identical HRT ? Brand Name HRT can often be problematic for many since it is more of a shotgun approach. My wife is on bio-identical HRT and it took a year or more to get the right balance. Her hormones have been near perfect now for almost a decade. Amazing difference.
Women's International Pharmacy has a good referral system. Plus, their price for compounded hormones is the best in the industry.
https://www.womensinternational.com/..._referral.html

If there is a difference between a snack at bed time vs hours before, you could do some journaling and try different timings. A week of at bedtime and a week of 2 hours before bedtime should be worthwhile. A snack of a Glucerna product would be interesting. It is designed to a have slow sugar impact on the blood stream.

The brain genetics spoke about a genetic predisposition to proper handling of the neurofibrillary Tau tangles. It is similar to the genetics of Alzheimer's. Familial aneurysms are a small part of all aneurysms (6 to 20%).

Mark In Idaho

Using bioidentical HRT compounded in local Pharmaca been on for 15 years - sim results as your wife once dialed in for me. I mentioned because I know how astute you are:) Used to use Women's Int'l cannot recall why I stopped -had some problems way back. May be worth another shot; they are expensive.
I will keep a food log -good way to track instead of in the brain.
Thanks again.

We compared many sources. Local compounders wanted 2 to 3 times what Women's International charges. My wife spends less than $40 a month on a triple compound of hormones. ($37.99)

Good for you if you found an affordable local source you trust.

My wife started about 15 years ago. I suddenly got my wife back. No more grumpy.

Do you have time to try an epsom salt bath before bed ? The mag in the epsom salt may help you sleep better. Plus, it would be a great way to end the day.

I never try to track anything in my brain. It's like a colander full of spaghetti . Lots leaks out and what's left is like a pile of spaghetti.

Had a dental appt today to get a filling done and took over 2 hours. Had to stop several times due to dizziness/vertigo type symptoms. The faint/lightheaded feeling is killing me. Felt like I could have passed out at any moment due to faintness.

Would vestibular rehabilitation help with this? Or am I stuck with it?

I get dizzy when the dentist reclines the chair. It's an issue as I wear braces & see the orthodontist every month.

I have been going for vestibular therapy2x/wk since last March and am making slow, steady progress.

Driving on curving roads including highway on/off ramps, driving more than 20 miles at a time, turning my head to see when I back up (new car rear view cameras are a big help as are light up side view mirrors) and even holding onto a raft in the water to swim- all give me vestibular symptoms. I keep ginger candy in the car to help with waves of nausea & dizziness. Peppermint Altoids are also helpful.


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Have you had somebody try the Epley Maneuver on you ? It resets the position of the crystals in your ear. You dentist chair problem suggests it may help.

I've read about it, but have tested negative for BPPV twice, so no one had walked me through the process or given it thought. Would this help given I don't technically have BPPV, but trauma related vertigo?

If I can just get this under control I can deal with the rest of the symptoms.